scholarly journals Outcome measures for assessing change over time in studies of symptomatic children with hypermobility: a systematic review

2020 ◽  
Author(s):  
Muhammad Maarj ◽  
Andrea Coda ◽  
Louise Tofts ◽  
Cylie Williams ◽  
Derek Santos ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Observational Study ◽  
Outcome Measures ◽  
Joint Hypermobility ◽  
Assessment Tools ◽  
Post Intervention ◽  
Associated Symptoms ◽  
Prospective Longitudinal

Abstract Background This study aimed to synthesise outcome measure type and use in interventional or prospective longitudinal studies of children with generalised joint hypermobility (GJH) and associated symptoms. Method Electronic searches of Medline, CINAHL and Embase databases from inception to 16th March 2020 were performed for studies of children with GJH and symptoms between 5-18 years reporting repeated outcome measures collected at least 4 weeks apart. Methodological quality of eligible studies were described using the Downs and Black checklist.Results Six studies comprising of five interventional, and one prospective observational study (total of 388 children) met the inclusion criteria. Interventional study durations were between 2 to 3 months, with up to 10 months post-intervention follow-up, while the observational study spanned 3 years. Three main constructs of pain, function and quality of life were reported as primary outcome measures using 20 different instruments. All but one measure was validated in paediatric populations, but not specifically for children with GJH and symptoms. One study assessed fatigue, reporting disabling fatigue to be associated with higher pain intensity. Conclusions There were no agreed sets of outcome measures for children with GJH and symptoms found. The standardisation of assessment tools across paediatric clinical trials is needed. Four constructs of pain, function, quality of life and fatigue are recommended to be included with agreed upon, validated, objective tools

scholarly journals Outcome measures for assessing change over time in studies of symptomatic children with hypermobility: a systematic review

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Muhammad Maarj ◽  
Andrea Coda ◽  
Louise Tofts ◽  
Cylie Williams ◽  
Derek Santos ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Observational Study ◽  
Outcome Measures ◽  
Prospective Observational Study ◽  
Joint Hypermobility ◽  
Assessment Tools ◽  
Post Intervention ◽  
Prospective Longitudinal

Abstract Background Generalised joint hypermobility (GJH) is highly prevalent among children and associated with symptoms in a fifth with the condition. This study aimed to synthesise outcome measures in interventional or prospective longitudinal studies of children with GJH and associated lower limb symptoms. Methods Electronic searches of Medline, CINAHL and Embase databases from inception to 16th March 2020 were performed for studies of children with GJH and symptoms between 5 and 18 years reporting repeated outcome measures collected at least 4 weeks apart. Methodological quality of eligible studies were described using the Downs and Black checklist. Results Six studies comprising of five interventional, and one prospective observational study (total of 388 children) met the inclusion criteria. Interventional study durations were between 2 and 3 months, with up to 10 months post-intervention follow-up, while the observational study spanned 3 years. Three main constructs of pain, function and quality of life were reported as primary outcome measures using 20 different instruments. All but one measure was validated in paediatric populations, but not specifically for children with GJH and symptoms. One study assessed fatigue, reporting disabling fatigue to be associated with higher pain intensity. Conclusions There were no agreed sets of outcome measures used for children with GJH and symptoms. The standardisation of assessment tools across paediatric clinical trials is needed. Four constructs of pain, function, quality of life and fatigue are recommended to be included with agreed upon, validated, objective tools.

scholarly journals SWE and SMI ultrasound techniques for monitoring needling treatment of ankylosing spondylitis: study protocol for a single-blinded randomized controlled trial

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Mengyu Wang ◽  
Wen Fu ◽  
Lingcui Meng ◽  
Jia Liu ◽  
Lihua Wu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Blood Flow ◽  
Ankylosing Spondylitis ◽  
Outcome Measures ◽  
Healthy Subjects ◽  
Acupuncture Group ◽  
Musculoskeletal Ultrasound ◽  
Sham Control ◽  
Post Intervention

Abstract Background Ankylosing spondylitis (AS) is a high-incidence disease in young men that interferes with patients’ physical and mental wellbeing and overall quality of life (QoL). It is often accompanied by arthralgia, stiffness, and limited lumbar flexibility. Acupuncture is safe and effective for reducing the symptoms of AS, but the underlying mechanisms by which it does so are not fully understood. Therefore, to objectively assess acupuncture efficacy, which is critical for patients making informed decisions about appropriate treatments, we will use shear-wave elastography (SWE) and superb microvascular imaging (SMI) ultrasound techniques to evaluate elasticity of lumbar paraspinal muscles and blood flow to the sacroiliac joint (SIJ) in AS. Methods We will recruit a total of 60 participants diagnosed with AS and 30 healthy subjects. Participants will be randomly allocated 1:1 to either an acupuncture group or a sham control acupuncture group. Primary-outcome measures will be musculoskeletal ultrasound, Ankylosing Spondylitis Quality of Life Scale (ASQoL), Bath Ankylosing Spondylitis Metrology Index (BASMI), and the Visual Analogue Scale (VAS) for pain. Secondary outcome measures will be the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI), Bath Ankylosing Spondylitis Function Index (BASFI), and Fatigue Scale-14 (FS-14). We will monitor the effect of acupuncture or sham acupuncture on blood flow and SIJ inflammation using SMI, lumbar-muscle stiffness using SWE and the lumbar paraspinal-muscle cross-sectional area (CSA) using a two-dimensional (2D) grayscale imaging. QoL, physical function, and fatigue will be assessed using an evaluation scale or questionnaire developed for this study, with outcomes measured by the ASQoL, BASMI, BASDAI, BASFI, and FS-14. Healthy subjects will not receive acupuncture but undergo only musculoskeletal ultrasound at baseline. Acupuncture and sham control acupuncture interventions will be conducted for 30 min, 2–3 times/week for 12 weeks. Musculoskeletal ultrasound will be conducted at baseline and post-intervention, while other outcomes will be measured at baseline, 6 weeks, and post-intervention. The statistician, outcome assessor, and participants will be blinded to treatment allocation. Discussion The results of this single-blinded, randomized trial with sham controls could help demonstrate the efficacy of acupuncture and clarify whether musculoskeletal ultrasound could be used to evaluate AS. Trial registration ClinicalTrials.gov ChiCTR2000031476. Registered 3 April 2020.

Association between multimodality measures of aortic stenosis severity and quality-of-life improvement outcomes after transcatheter aortic valve replacement

2021 ◽  
Author(s):  
Michael A Catalano ◽  
Shahryar G Saba ◽  
Bruce Rutkin ◽  
Greg Maurer ◽  
Jacinda Berg ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Computed Tomography ◽  
Aortic Valve ◽  
Transcatheter Aortic Valve Replacement ◽  
Multivariable Analysis ◽  
Calcium Score ◽  
Post Intervention ◽  
Transcatheter Aortic Valve

Abstract Aims Up to 40% of patients with aortic stenosis (AS) present with discordant grading of AS severity based on common transthoracic echocardiography (TTE) measures. Our aim was to evaluate the utility of TTE and multi-detector computed tomography (MDCT) measures in predicting symptomatic improvement in patients with AS undergoing transcatheter aortic valve replacement (TAVR). Methods and results A retrospective review of 201 TAVR patients from January 2017 to November 2018 was performed. Pre- and post-intervention quality-of-life was measured using the Kansas City Cardiomyopathy Questionnaire (KCCQ-12). Pre-intervention measures including dimensionless index (DI), stroke volume index (SVI), mean transaortic gradient, peak transaortic velocity, indexed aortic valve area (AVA), aortic valve calcium score, and AVA based on hybrid MDCT-Doppler calculations were obtained and correlated with change in KCCQ-12 at 30-day follow-up. Among the 201 patients studied, median KCCQ-12 improved from 54.2 pre-intervention to 85.9 post-intervention. In multivariable analysis, patients with a mean gradient >40 mmHg experienced significantly greater improvement in KCCQ-12 at follow-up than those with mean gradient ≤40 mmHg (28.1 vs. 16.4, P = 0.015). Patients with MDCT-Doppler-calculated AVA of ≤1.2 cm2 had greater improvements in KCCQ-12 scores than those with computed tomography-measured AVA of >1.2 cm2 (23.4 vs. 14.1, P = 0.049) on univariate but not multivariable analysis. No association was detected between DI, SVI, peak velocity, calcium score, or AVA index and change in KCCQ-12. Conclusion Mean transaortic gradient is predictive of improvement in quality-of-life after TAVR. This measure of AS severity may warrant greater relative consideration when selecting the appropriateness of patients for TAVR.

scholarly journals Bone Pain in Multiple Myeloma (BPMM)—A Protocol for a Prospective, Longitudinal, Observational Study

Cancers ◽  
2021 ◽  
Vol 13 (7) ◽  
pp. 1596
Author(s):  
Marta Diaz-delCastillo ◽  
Rebecca E. Andrews ◽  
Aritri Mandal ◽  
Thomas L. Andersen ◽  
Andrew D. Chantry ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Myeloma ◽  
Observational Study ◽  
Bone Turnover ◽  
Bone Pain ◽  
Subjective Experience ◽  
Prospective Longitudinal ◽  
Bone Turnover Biomarkers

Multiple myeloma (MM) is a bone marrow neoplasia that causes bone pain in 70% patients. While preclinical models of MM have suggested that both nerve sprouting and nerve injury may be causative for the pain, there is a lack of clinical data. Thus, the primary aims of this clinical study are: (1) to provide a deep characterization of the subjective experience of pain and quality of life in MM patients; (2) to investigate disturbances in the bone innervation of MM patients. Secondary aims include exploring correlations between pain and serum inflammatory and bone turnover biomarkers. In a prospective, observational study (clinicaltrials.gov: NCT04273425), patients with suspected MM requiring a diagnostic iliac crest biopsy at Sheffield Teaching Hospital (UK) are invited to participate. Consenting patients answer seven standardized questionnaires assessing pain, quality of life and catastrophizing. Bone turnover biomarkers and inflammatory cytokines are measured in fasting serum samples, and bone innervation is evaluated in diagnostic biopsies. MM patients are invited to a follow-up upon completion of first line treatment. This will be the first deep characterization of pain in MM patients and its correlation with disturbances in bone innervation. Understanding how bone turnover and inflammation correlate to pain in MM is crucial to identify novel analgesic targets for this condition.

Abstract 3024: Autogenic Training to Manage Chest pain in Women with Angina and Normal Coronary Arteries.

Circulation ◽  
2007 ◽  
Vol 116 (suppl_16) ◽  
Author(s):  
Elizabeth A Asbury ◽  
Nasim Kanji ◽  
Edzard Ernst ◽  
Mahmoud Barbir ◽  
Peter Collins
Keyword(s):  
Quality Of Life ◽  
Symptom Severity ◽  
Syndrome X ◽  
Cardiac Syndrome X ◽  
Post Intervention ◽  
Health Functioning ◽  
Cardiac Syndrome ◽  
Symptom Diary

Background: Women with angina pectoris, a positive exercise ECG for myocardial ischaemia and angiographically smooth coronary arteries (Cardiac Syndrome X), suffer increased psychological morbidity, debilitating symptomology and a poor quality of life. Autogenic Training (AT), a hypnosis-based auto-suggestive relaxation technique improved anxiety and quality of life in patients with CHD, multiple sclerosis and breast cancer. An exploration of AT as a treatment for Syndrome X was therefore undertaken. Methods: Fifty three female Syndrome X patients (mean ± SD; 57.4 ± 8.0 yrs) were randomised to an 8-week group-based AT and symptom diary program or symptom diary only control. Weekly group AT sessions were supported by an individual home program. The Hospital Anxiety and Depression Scale (HADS) Spielberger State-Trait Anxiety Inventory (STAI) Cardiac Anxiety Questionnaire (CAQ) and the Ferrans & Powers Quality of Life Index (QLI) were completed pre- and post-intervention and at 8-week follow-up. Results : Post-intervention, AT patients had reduced symptom severity (2.08 ± 1.03 vs. 1.23 ± 1.36, p=0.02) and frequency (6.11 ± 3.17 vs. 1.66 ± 2.19, p<0.001) with improved severity (8.04 ± 10.08 vs. 1.66 ± 2.19, p<0.001) and a trend toward reduced symptom frequency (1.95 ± 1.19 vs. 1.23 ± 1.36, p=0.063) compared to controls. Following AT, improved QLI health functioning (17.80 ± 5.74 vs. 19.41 ± 5.19, p=0.04) and CAQ fear (1.53 ± 0.61 vs. 1.35 ± 0.56, p=0.02) were found, with improvements in QLI health functioning (17.80 ± 5.74 vs. 20.09 ± 5.47, p=0.01), CAQ fear (1.53 ± 0.61 vs. 1.30 ± 0.67, p=0.002) CAQ total (1.42 ± 0.54 vs. 1.29 ± 0.475, p=0.04), STAI trait anxiety (42.95 ± 11.19 vs. 38.68 ± 11.47, p=0.01) and QLI quality of life (20.67 ± 5.37 vs. 21.9 ± 4.89, p=0.02) at follow-up. Post-monitoring changes in HADS depression (5.1 ± 3.3 vs. 4.2 ± 3.2, p=0.01), total HADS (13.95 ± 6.84 vs. 12.22 ± 5.75, p=0.02), CAQ avoidance (1.51 ± 0.92 vs. 1.24 ± 0.89, p=0.03), attention (1.33 ± 0.78 vs. 1.16 ± 0.57. p=0.05) and CAQ total (1.39 ± 0.6 vs. 1.23 ± 0.52, p=0.01) were shown in the control group. None were maintained at follow-up. Conclusion : An 8-week AT program has been shown to improve symptom severity and frequency, psychological morbidity and quality of life in women with Cardiac Syndrome X.

scholarly journals Determinants of vision function related quality of life of patients undergoing unilateral cataract surgical services in charitable hospitals in India: a multicentre prospective cohort study

2018 ◽  
Vol 5 (3) ◽  
pp. 1138
Author(s):  
Elizabeth Kurian ◽  
Pankaj Vishwakarma ◽  
Jaikumar Deenadayalan ◽  
Amit Mondal ◽  
Dhanaji Ranpise ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cohort Study ◽  
Visual Function ◽  
Psychosocial Impact ◽  
General Function ◽  
Post Surgery ◽  
Multiple Classification Analysis ◽  
Prospective Longitudinal

Background: Cataract is the leading cause of avoidable blindness in developing world, including India. The objective of this study is to measure the changes in quality of life (VRQoL) after cataract surgery and identify the predictors of an improvement in these outcomes.Methods: A multi-center prospective, longitudinal cohort study was conducted. At baseline patients aged ≥18 years with first-eye cataract were interviewed about VRQoL. Six months’ later participants were re-interviewed at their residences. Multiple classification analysis (MCA) was performed to assess the variation in the intensities of mean change scores for general function, psychosocial impact and visual function with select factors.Results: The six-month follow-up rate was 87.3%. There was a significant improvement in visual acuity and VRQoL post-surgery. The mean general function, psychosocial impact and visual function scores were 34.6 (SD 10.9), 10.5 (SD 3.7) and 8.4 (SD 2.2) in the baseline and 15 (SD 5.5), 5 (SD 2.2) and 4.4 (SD 1.6) in the follow-up assessments, respectively. In MCA, patients prescribed spectacles post-surgery (β 0.137) and those from rural backgrounds (β 0.137) had the most impact on general function. Patients with complete follow-up visits had a relatively higher effect on the psychosocial impact (β 0.084) whereas patients from rural background and men had the most impact on the visual function scores (β 0.102 and 0.076) respectively.Conclusions:Cataract surgery is associated with meaningful improvements in VRQoL in general. The determinants of better VFQoL include regular and complete patient follow-up visits and prescription and provision of spectacles post-surgery.  

scholarly journals Clinical Evolution and Quality of Life in Clinically Based COPD Chronic Bronchitic and Emphysematous Phenotypes: Results from the 1-Year Follow-Up of the STORICO Italian Observational Study

2021 ◽  
Vol Volume 16 ◽  
pp. 2133-2148
Author(s):  
Francesco Blasi ◽  
Raffaele Antonelli Incalzi ◽  
Giorgio Walter Canonica ◽  
Pietro Schino ◽  
Giuseppina Cuttitta ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Observational Study ◽  
Clinical Evolution

scholarly journals Changes in self-rated health and quality of life among Syrian refugees migrating to Norway: a prospective longitudinal study

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Jasmin Haj-Younes ◽  
Elisabeth Marie Strømme ◽  
Jannicke Igland ◽  
Bernadette Kumar ◽  
Eirik Abildsnes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Longitudinal Study ◽  
Syrian Refugees ◽  
Prospective Longitudinal Study ◽  
Mean Values ◽  
Self Rated Health ◽  
Prospective Longitudinal ◽  
Over Time

Abstract Background Forced migrants can be exposed to various stressors that can impact their health and wellbeing. How the different stages in the migration process impacts health is however poorly explored. The aim of this study was to examine changes in self-rated health (SRH) and quality of life (QoL) among a cohort of adult Syrian refugees before and after resettlement in Norway. Method We used a prospective longitudinal study design with two assessment points to examine changes in health among adult Syrian resettlement refugees in Lebanon accepted for resettlement in Norway. We gathered baseline data in 2017/2018 in Lebanon and subsequently at follow-up one year after arrival. The main outcomes were good SRH measured by a single validated item and QoL measured by WHOQOL-BREF. We used generalized estimating equations to investigate changes in outcomes over time and incorporated interaction terms in the models to evaluate effect modifications. Results In total, 353 subjects participated in the study. The percentage of participants reporting good SRH showed a non-significant increase from 58 to 63% RR, 95%CI: 1.1 (1.0, 1.2) from baseline to follow-up while mean values of all four QoL domains increased significantly from baseline to follow-up; the physical domain from 13.7 to 15.7 B, 95%CI: 1.9 (1.6, 2.3), the psychological domain from 12.8 to 14.5 B, 95%CI: 1.7 (1.3, 2.0), social relationships from 13.7 to 15.3 B, 95%CI: 1.6 (1.2, 2.0) and the environmental domain from 9.0 to 14.0 5.1 B, 95%CI: (4.7, 5.4). Positive effect modifiers for improvement in SRH and QoL over time include male gender, younger age, low level of social support and illegal status in transit country. Conclusion Our results show that good SRH remain stable while all four QoL domains improve, most pronounced in the environment domain. Understanding the dynamics of migration and health is a fundamental step in reaching health equity.

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